Functioning Labels, Diagnostic Labels, and Neurodiversity
Functioning Labels, Diagnostic Labels, and Neurodiversity
{Image Description: Black background wth hands shaking that are covered in paint. The paint is green, blue, yellow, and red, as well as orange. Green text on the graphic reads: "Functioning labels and Diagnostic labels that are outdated are ableist." Following that, below the hands shaking is yellow text that reads: "Autistics are autistic. They are not "high/low functioning, and Hans Asperger was a Nazi who used Eugenics."}
Recently I had a music therapist tell me that she loved my advocacy writing on a blog post on ABA. If anyone has not read what I wrote about ABA, the post is here. I've noticed that the more I write, the more it tends to help professionals understand our community. Therefore, I've decided to go further into autistic history. This blog post will be about labels, but also about language and people who, besides Ivar Lovaas did harm. I am in the process of creating individual blog posts about each person from the 60s and beyond that have done harm to our community. I wanted to share that this blog post will be addressing the following content as a content warning: eugenics, euthanasia, ableism, oppression, and may include language that will be graphic. The intent of this blog post is for educational reasons. The history wasn't just ableist, it was also systemically queerphobic and racist, as well as anti-semitic.
Where to begin? Well, first of all, I will be addressing the labels themselves. The reasons that autistic people do not approve of the following labels will be explained as well:
The functioning labels (high and low) were not actually coined by professionals (which is why they are not correct), but parents, rather. This is continuously noticeable in that professionals are not the only oppressors our community faces. Non-autistic parents cannot speak for their children and cannot speak for adults because of lived experiences. Autistic parents are not seen as important enough in society, and society mainly focuses on non-autistic voices because of parents in the 1990s who wanted to call people high and low functioning.
1. High functioning: Oftentimes those who are perceived as "high functioning" are not able to be accepted as disabled because people don't understand that autism is not a physical disability (or even a psychiatric disability)-- rather, it's a neurological developmental disability. So, it is not a disorder, disease, or vaccine injury. Oftentimes we have to prove to people that we are disabled because of stigma towards invisible disabilities in the disability community as a whole. I am perceived this way often, and the problem is that these unhelpful perceptions persistently dismiss my challenges. The environment around me is what I find challenging for autism. What do I prefer to use for this label instead? Low support needs. Someone who has low support needs; however, does not have low support needs all the time. These labels create the black and white thinking that is very problematic as a whole. We're perceived to be this way due to autistic masking, which can be unlearned over a period of time, but not 100 percent or fully.
Recently I had a music therapist tell me that she loved my advocacy writing on a blog post on ABA. If anyone has not read what I wrote about ABA, the post is here. I've noticed that the more I write, the more it tends to help professionals understand our community. Therefore, I've decided to go further into autistic history. This blog post will be about labels, but also about language and people who, besides Ivar Lovaas did harm. I am in the process of creating individual blog posts about each person from the 60s and beyond that have done harm to our community. I wanted to share that this blog post will be addressing the following content as a content warning: eugenics, euthanasia, ableism, oppression, and may include language that will be graphic. The intent of this blog post is for educational reasons. The history wasn't just ableist, it was also systemically queerphobic and racist, as well as anti-semitic.
Where to begin? Well, first of all, I will be addressing the labels themselves. The reasons that autistic people do not approve of the following labels will be explained as well:
The functioning labels (high and low) were not actually coined by professionals (which is why they are not correct), but parents, rather. This is continuously noticeable in that professionals are not the only oppressors our community faces. Non-autistic parents cannot speak for their children and cannot speak for adults because of lived experiences. Autistic parents are not seen as important enough in society, and society mainly focuses on non-autistic voices because of parents in the 1990s who wanted to call people high and low functioning.
1. High functioning: Oftentimes those who are perceived as "high functioning" are not able to be accepted as disabled because people don't understand that autism is not a physical disability (or even a psychiatric disability)-- rather, it's a neurological developmental disability. So, it is not a disorder, disease, or vaccine injury. Oftentimes we have to prove to people that we are disabled because of stigma towards invisible disabilities in the disability community as a whole. I am perceived this way often, and the problem is that these unhelpful perceptions persistently dismiss my challenges. The environment around me is what I find challenging for autism. What do I prefer to use for this label instead? Low support needs. Someone who has low support needs; however, does not have low support needs all the time. These labels create the black and white thinking that is very problematic as a whole. We're perceived to be this way due to autistic masking, which can be unlearned over a period of time, but not 100 percent or fully.
2. Low functioning/severe: Non-speaking and high support needs individuals are often the ones who are regularly forgotten about by privileged people in society; however, not any less forgotten about than those who do speak. Communication, verbal or not, is never black and white. Someone who may be considered non-speaking is not entirely non-speaking. The non-speaking label is preferred over non-verbal by most due to the stereotypical assumption that all non-speakers are entirely non-verbal, which creates black and white thinking. I myself deal with what is called situational mutism. I am unable to speak in situations where I am completely traumatized. Non-autistic people can also have situational mutism, but it does not come along with apraxia, echolalia, stuttering, and more for them. I also deal with apraxia, echolalia, and palilalia, as well as verbal stimming. So I am not entirely non-speaking, but I am also not entirely verbal either. I can verbally talk, but I was taught sign language at the age of two, so that makes me partially non-speaking. I also prefer video chats and texting over phone calls. Auditory processing requires me to use closed captions, which allows me to process language faster. I can handle phone calls, but prefer video chats. Calling someone "severe" is also derogatory and it's also considered a slur by many non-speakers. Non-speakers likely prefer to be referred as having high support needs.
3. Deficit: This word is frankly insulting. Instead of treating us like human beings, researchers had to go the extra mile to treat us like something other than human. We've always been dehumanized since the beginning of time. I am not a deficit, I am not ill. I am not a disease. There is nothing wrong with me, or my brain. Deficit is suggesting that we as human beings can't be beyond our diagnoses. That people can't see me for more than my disability, which is heavily objectifying.
4. Behavioral issues: I've seen too many parents throw this around, as if autistic behavior is a flaw in the system, and shouldn't be accepted. The worst part is that the parents I've talked to that refuse to accept Neurodiversity, as if their children are burdens, will continue to describe their children as if they do. The parents were taught by professionals to use the language, because I've witnessed professionals who do not understand autistic culture also throw this word around. Your child, who someday will be an adult, does not have behavioral issues due to autism. And to the professional who keeps blaming the child for not listening to compliance: I'm very proud of your client because they're doing exactly what Neurodiversity teaches them. Self-injurious behaviors are the only behaviors, as well as harm directed at others that need to be re-directed.
4. Behavioral issues: I've seen too many parents throw this around, as if autistic behavior is a flaw in the system, and shouldn't be accepted. The worst part is that the parents I've talked to that refuse to accept Neurodiversity, as if their children are burdens, will continue to describe their children as if they do. The parents were taught by professionals to use the language, because I've witnessed professionals who do not understand autistic culture also throw this word around. Your child, who someday will be an adult, does not have behavioral issues due to autism. And to the professional who keeps blaming the child for not listening to compliance: I'm very proud of your client because they're doing exactly what Neurodiversity teaches them. Self-injurious behaviors are the only behaviors, as well as harm directed at others that need to be re-directed.
5. Mental Retardation: This word is a slur. Do not use it. If you are using it to teach others to not use it, please do not say the word, especially if you are not a part of the community. A lot of the time an autistic who is an abusive situation won't tell you not to say it so they don't get into trouble, but the word is a slur. If you are not part of that identity, do not use the word. If you are, don't use it either. I don't say the N word, so people shouldn't be using this at all.
6. Any other pathologizing medical model word to describe autism may be added to this list over time.
Now that I've covered functioning labels and other harmful labels, the need for other diagnostic labels needs to be written about in terms of the history of why they are outdated.
Who invented the word autism? Where does the word Asperger's come from? I see so many autistic written blog posts discussing the functioning labels, but not enough analyzing the other labels. The word autistic is derived from the German word autistisch. Autism was actually coined by Lorna Wing, who is referred typically as the mother of "the autism spectrum." A photo of her is below:
(Image Description: A smiling older white woman, wearing a
blue floral shirt, and sitting in a
chair with a tan jacket over the back of the chair.
She has a cup of tea on the table with a side plate
underneath that matches the design on the cup.}
Lorna coined it, but the label was not brought to the United States until 1994. Lorna is not from the US; rather, she was born in the UK and died in 2014. Her activism work is most notable when she co-founded the National Autistic Society (NAS); however, many autistic people from the UK are not huge fans of the NAS due to further stigmatization of autism itself. She set up her first diagnostic centre for autism in the UK in 1991. Lorna was the mother of Susie, who is autistic. Lorna herself was not autistic. More can be found on the NAS site here.
Other commonly known diagnostic outdated labels:
1. PDD-NOS: PDD-NOS stands for Pervasive Developmental Disorder, Not Otherwise Specified. It was coined by Leo Kanner in the United States in 1980. He worked in Baltimore, Maryland at John's Hopkins University. His work has been continued through the John's Hopkins Peabody Institute, which is a highly ableist institution that provides ABA therapy to non-speaking and high support needs' children that are autistic and multiply disabled. Leo Kanner thought that autism existed in cisgender male children. Lorna Wing created the label autism before Leo Kanner brought PDD-NOS to the United States. Leo Kanner was another contributor to the stereotypes about how autism in women is perceived.
Other commonly known diagnostic outdated labels:
1. PDD-NOS: PDD-NOS stands for Pervasive Developmental Disorder, Not Otherwise Specified. It was coined by Leo Kanner in the United States in 1980. He worked in Baltimore, Maryland at John's Hopkins University. His work has been continued through the John's Hopkins Peabody Institute, which is a highly ableist institution that provides ABA therapy to non-speaking and high support needs' children that are autistic and multiply disabled. Leo Kanner thought that autism existed in cisgender male children. Lorna Wing created the label autism before Leo Kanner brought PDD-NOS to the United States. Leo Kanner was another contributor to the stereotypes about how autism in women is perceived.
2. Asperger's Syndrome: Asperger's was not coined by Hans Asperger, but named after him. Asperger was a Nazi in Germany during the Holocaust and used euthanasia on many non-speaking autistic individuals. Yet, the APA's capitalist agenda in the US labeled an entire community after someone who euthanized us and supported and condoned Eugenics, which is one of many forms of oppression. Those who are perceived as "high functioning" were labeled with Asperger's syndrome. Asperger's did not exist in the DSM until 1994 after PDD-NOS was removed from the DSM. PDD-NOS can be found in the DSM 3, which is heavily outdated and not reliable in 2020 (nor is the DSM-lV, which includes the labels Asperger's Syndrome and Autism). Instead of keeping the autism label, professionals furthered their misunderstanding of autism by calling autism ASD in 2010, while keeping the functioning labels into 3 categories. There are not "multiple types" of autism; rather, there is just autism alone. We do not know when professionals will just start calling people autistic. Removing the DX from the DSM won't happen any time soon, but neurological disabilities aren't the same thing as psychiatric disorders, like anxiety or depression, or even bipolar disorder.
3. Autism Spectrum Disorder: This diagnosis name is being put here because autism is not a disease. It's not a psychiatric disorder or a mental illness. There is a huge difference between a neurological developmental disability and a disorder. There is no excuse to not just call people autistic, simply because autism is not quantitative. Individuals who keep measuring us routinely dismiss cultural aspects of science. The ASD label was created in 2010 in the DSM-V.
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Autistics mainly prefer what is called identity first language. We don't consider autism to be a separate issue surrounding a "normal identity" of ourselves. After all, autism is not a shell surrounding a "normal" child or adult. I'd rather be called autistic than 'a person with autism', simply because of misconceptions about functioning, competency, and success. A person who is disabled desires to grow up with parents who accept their disability, and yet autistics' autonomies are regularly ostracized, so it makes it harder for a good majority of us to grow up with self-confidence, self-acceptance, etc., because we are frequently taught to be very co-dependent on our parents, which is unhealthy. And parents will expect, typically, to choose whether they live on their own or with supports. This is largely problematic due to the need for the parent to treat their child when the child grows into an adult not like an adult. Our autonomy is not accepted. This needs to change. Disability isn't a bad word, nor is autism.
Affirming words used based on the social model of disability:
1. Autistic: this word matters to many individuals, except for Aspie Supremacists and the autistic dark web (AWD). Aspie Supremacists and ADWers reject the autistic label and only ever see autistic people as "high functioning", due to their own internalized lateral ableism. The autistic dark web wants to be cured, and they typically only make up 8 percent of our community because 92 percent do not want to be cured. Autism is not a bad word.
2. High Support/Low Support Needs: These words should acknowledge the fact that autism is not quantitative, yet some people still even think when these words are used, it's somehow still black and white. We're accused of black and white thinking all of the time; however, a lot of non-autistic people can also think in black and white.
3. Disabled: I don't identify as differently abled because I deal with something that is a part of me that cannot be changed, and I do let my disability define me because there is no shame in being autistic. I do not; however, let stereotypes and bias define me. Disability is not a bad word, nor is autism.
4. Neurodivergent: Many use this word instead of the word neurodiverse because neurodivergent was coined by an autistic BIPOC.
5. Neurodiversity: This term was coined by Judy Singer. It's defined as "the diversity of human brains and human minds. The enormous diversity among individual human minds is a product of multiple factors, including environment, culture, family, and personal history. But human minds also possess an innate diversity, which interacts with these other factors to produce the unique individuality of each human being," (Walker, 2013).
Source: Here
6. Neurodiversity Paradigm: "a perspective that recognizes neurodiversity as a naturally-occurring form of human diversity, like cultural diversity, racial diversity, gender diversity, diversity of physical ability, and diversity of sexual orientation," (Walker, 2013).
Affirming words used based on the social model of disability:
1. Autistic: this word matters to many individuals, except for Aspie Supremacists and the autistic dark web (AWD). Aspie Supremacists and ADWers reject the autistic label and only ever see autistic people as "high functioning", due to their own internalized lateral ableism. The autistic dark web wants to be cured, and they typically only make up 8 percent of our community because 92 percent do not want to be cured. Autism is not a bad word.
2. High Support/Low Support Needs: These words should acknowledge the fact that autism is not quantitative, yet some people still even think when these words are used, it's somehow still black and white. We're accused of black and white thinking all of the time; however, a lot of non-autistic people can also think in black and white.
3. Disabled: I don't identify as differently abled because I deal with something that is a part of me that cannot be changed, and I do let my disability define me because there is no shame in being autistic. I do not; however, let stereotypes and bias define me. Disability is not a bad word, nor is autism.
4. Neurodivergent: Many use this word instead of the word neurodiverse because neurodivergent was coined by an autistic BIPOC.
5. Neurodiversity: This term was coined by Judy Singer. It's defined as "the diversity of human brains and human minds. The enormous diversity among individual human minds is a product of multiple factors, including environment, culture, family, and personal history. But human minds also possess an innate diversity, which interacts with these other factors to produce the unique individuality of each human being," (Walker, 2013).
Source: Here
6. Neurodiversity Paradigm: "a perspective that recognizes neurodiversity as a naturally-occurring form of human diversity, like cultural diversity, racial diversity, gender diversity, diversity of physical ability, and diversity of sexual orientation," (Walker, 2013).
Source: Here
7. Other terms associated can be found on Nick Walker's website, Neurocosmopolitanism.
My hope is that more people find this blog post helpful when they are looking to learn about Neurodiversity and Autism.
7. Other terms associated can be found on Nick Walker's website, Neurocosmopolitanism.
My hope is that more people find this blog post helpful when they are looking to learn about Neurodiversity and Autism.
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